NOTE: since I began writing this post, the Centre for Infection and Immunity at Columbia University’s Mailman School of Public Health in New York City released the findings of a large study of ME/CFS (see below) patients. Media coverage has been extensive – although much of it is standard churnalism, rather than anything more trenchant (see my previous post). This study could prove to be a game-changer, a minor milestone or just a flash in the pan. It’s too soon to make a realistic assessment but so far the results – and the consequent extended narrative of this illness – look promising.

It transpired that there were two files – one from the Department of Work and Pensions (DWP, formerly known as the Department of Social Security – DSS) and one from the Medical Research Council (MRC). The files contain documentation about ME/CFS (correspondence, notes of meetings, background material and details of benefits claims/research applications). Both files had been reviewed and archived in the normal way during the 1990’s. Because each file contained information which was properly exempt from disclosure under the Act, they were closed to the public until 2072 (DWP) and 2071 (MRC – pictured above).

It took me more than a year but the files were eventually released, although still with some redactions. It was always my intention to upload them here as soon as I was able. The files can be found elsewhere online but not everyone who has an interest will necessarily have been able to access them. My aim is to make them more widely available for academic, educational and research purposes. You can download the first file (DWP) from the end of the previous post (Part 1). The link from which to download the second file (MRC) appears at the end of this post.

What do we learn from the files?

Looking at both files, I am struck again by the abject dismissal of patient input by government agencies. It could reasonably be argued that patients are frequently viewed with contempt. The enormous cache of emails acquired in 2014 by US attorney and ME patient advocate, Jeannette Burmeister, showed a similar disregard for patient concerns. Ms Burmeister was subjected to protracted and costly resistance from the US Department of Health and Human Services (HHS) and the National Institutes of Health (NIH) in her two (connected) FOIA lawsuits. The extraordinary lengths to which she had to go to obtain the emails are detailed in her blog, Thoughts About ME (full compliance by HHS/NIH with court orders is still outstanding; blog updates will follow in due course).

The files which I obtained from TNA and the emails which Ms Burmeister extracted from HHS/NIH are separated both in space, by the Atlantic Ocean, and in time, by approximately twenty years. However, it is striking that the attitudes of the respective US and UK government agencies towards their patient populations is remarkably similar. For example, the first document contained within the MRC file comprises the “Highlights” (sic) of the CIBA Foundation Symposium on Chronic Fatigue Syndrome (sic)in May 1992. The fourth page contains this illuminating statement:

The first duty of the doctor is to support as much useful function as possible and avoid the legitimisation of symptoms and reinforcement of disability(my emphasis).

If we then compare that document with an example from Ms Burmeister’s blog, the title of this post demonstrates an almost identical attitude towards patients:

P2P FOIA Documents, Part 6 – “File all these [patient] responses. No need to answer them directly”.

In the “Secret Files”, patients are patronized and vilified; in the HHS emails (twenty years later and four thousand miles away) another branch of the same patient group is still marginalized and, in addition, is clearly regarded as a source of extreme irritation in simply having the impertinence to question the workings of the relevant agencies.

What next?

In a previous post, I observed that “we are still in an era of control rather than collaboration. If patients are not key stakeholders in this process then I don’t know who is”. The “process” in question is the presumed efforts of all interested parties – medical, scientific, administrative and political as well as patient – to gain proper recognition and treatment via agreed diagnostic criteria and clinical guidance.

It could be argued that while patients from any disease group should have input into their own process, nevertheless that process should still be led by the medical and scientific community, under the auspices of the appropriate government agencies. I would argue that ME patients are now in a unique category. I can think of no other disease in the modern age which, having initially been regarded as hysterical or psychosomatic in origin, has remained stigmatized and untreatable for so long. Anecdotally speaking, diseases such as MS, polio, epilepsy and HIV/AIDS were all dismissed by clinicians and politicians early on in their development; all have since progressed to a stage of diagnostic near-certainty and officially-sanctioned treatments.

In the case of HIV/AIDS, this took about twenty years. By contrast, ME was first documented more than eighty years ago but patients are still not routinely recognised as having a “real” illness and there is still no effective treatment. Funding is derisory or non-existent. This must qualify it for a unique status which justifies special pleading on behalf of its patients. This is not to detract from the interests of other serious illnesses; it is merely to restore ME to its rightful place in that group, as it was over sixty years ago.

The recent IOM report (see previous post) purports to address some of these issues but many patients do not believe that its recommendations (even if accepted by HHS) will lead to significant and rapid improvement. Without meaningful patient involvement and direction, the status quo will not change; the suffering of a twenty million plus worldwide patient population will continue indefinitely. Collaboration must replace control.

Back to the future

I am often asked whether we can make use of the information from these files now. At this stage, practical use of their contents is limited as they are over twenty years old and their contents are “stale”. Nevertheless, the files are now available publicly as a historical record and a vital resource for researchers. There is also the additional bonus of providing evidence with which to rebut any denials of statements contained within the files that the authors/speakers actually made them in the first place.

The link at the foot of this post is for the MRC file. It is 158 pages long and is described as follows on the title page on TNA’s website: “Myalgic encephalomyelitis (ME)/ postviral fatigue syndrome (PFS): papers and journal articles; correspondence and enquiries with MRC replies”. The dates covered are 1988-1997.

DOWNLOAD pdf text file (this may take a few minutes so please be patient):NatArchFD234553

Fingers crossed for a continued positive-ish extended narrative rather than more of the dreaded (British) churnalism when it comes to ignoring all things science as regards ME. Thanks for your excellent, hard work.

It appears that you are suggesting that HIV/AIDS fell in to the a category of diseases that had ‘initially been regarded as hysterical or psychosomatic in origin’ and that it had been ‘dismissed by clinicians and politicians early on in [its] development’, this is not true. HIV/ AIDS has always been percived as clinically very real and very deadly, the only hysterical aspect was the initial reporting of it as a ‘gay plague’.

Great effort and determination, Valerie, most appreciated! But not even scratching the surface of the depths of the systematic invalidation for $s. In one of my three Testimonies to the HSS, I coined the term “Economic War” October 2000) to summarize the motive for the wholesale denigration of PWC / FM / GWS / Asperger’s / Autism / ADD / ADHD et al… The slothful GREED that pervades our society is murderous indeed! And it’s NO SECRET, their malfeasance!

Hi Valerie. I am Valerie as well. I am writing a book in Canada about my own ME/CFS experience and the stories of others around the world. I was following up on a media article which eventually brought me to your site. I would like to chat with you if possible about this area of my book which you write about on this blog. Thank you for all your hard work in that part of the world. Please connect if you can.